On the one hand, the state of the science of cancer research and patient care is the brightest it has ever been. On the other hand, the politics and policy impacting the cancer world seem to be moving in the exact opposite direction.

08.30.03

Excuse me if I seem to exhibit a bit of schizophrenia. I'm not sure whether to be optimistic or pessimistic. On the one hand, the state of the science of cancer research and patient care is the brightest it has ever been. On the other hand, the politics and policy impacting the cancer world seem to be moving in the exact opposite direction.

So what are we to believe? More importantly, what will we do?

The Good News

Last week I attended the National Dialogue on Cancer (NDC) meeting on behalf of IMF’s Susie Novis. Susie is the only representative of the myeloma community who is a member of the NDC. Chaired by former President George Bush and his wife Barbara, the NDC is a unique entity that brings together members of the private, public, and non-profit sectors of the cancer community for biannual meetings to with the goal of significantly reducing cancer incidence and mortality within the decade.

As a member of the NDC Cancer Research Team, I have learned first hand about the real potential for significant advances in cancer research through targeted therapies of genomic and proteomic medicine development. I have learned that we may soon see a future free of chemotherapy drugs. Drugs that target cancers at their genetic and molecular roots will replace them. I have seen glimpses of future that will put chemotherapy into the outmoded category of the medicinal use of leeches.

At the last NDC meeting, NDC founding member and vice chair Andrew von Eschenbach, the director of the National Cancer Institute (NCI), unveiled his 2015 initiative. Its ambitious goal is the elimination of suffering and death due to cancer by the year 2015. This may be audacious, but it is not nearly as unthinkable as it was just five years ago. And just like President Kennedy's challenge to the nation in 1962 that we would be on the moon by the end of the decade, Dr. von Eschenbach's initiative goal should focus our efforts in ways we find it difficult to imagine. But it can be achieved if we make the national commitment and sacrifices needed to get there from here.

The 2015 initiative may be the most ambitious scientific goal of our lifetimes. Imagine a world without death and suffering due to cancer. If you're reading this, you know how audacious a goal that is. You've seen far too much of cancer and its consequences to take this seriously. It might even seem cruel.

But the truth is that it is within our grasp. The investment our nation has made into cancer research since President Nixon signed the National Cancer Act into law in 1971 is now beginning to pay off in remarkable ways. In the past two years we have seen the approval of the first three molecularly target drugs. As many as 300 more are currently in development. Over the course of the next decade, the science may drive this number well past 1,000.

While we have had steady growth in our understanding about how the mechanisms of cancer work, we will now need exponential growth. That will mean a need for more researchers, more public and private investment, more participation of patients in cancer trials, more engagement of policy makers and citizens in the decision-making process, and, most importantly, more public understanding of the cost of cancer and why it matters that cancer should be our nation's most important health care priority.

Whether or not we achieve the goals of the 2015 initiative by the year 2015, one thing is clear: we can realistically anticipate a world in which our children and our children's children will not suffer and die because of cancer. Let's not quibble about dates, but let's use them as incentives to speed up the achievement of the goals.

The Bad News

Juxtaposing the grand vision of the 2015 initiative, Congress and the president have decided to dramatically reduce their previous commitments of funding for the National Institutes of Health. Additionally, access to and funding for cancer treatment took a hard blow in the proposed Medicare reform bills passed by the House and Senate.

After the relatively giddy 5-year process of doubling NIH budget—an average 15% per year—President Bush recommended slightly more than a 2% increase for fiscal year 2004. This small increase barely keeps pace with the rate of inflation and translates into a flat funding scenario at best. Within those amounts, the request for NCI totaled just $170 million for a total of $4.77 billion.

In late June 2003, the fate of the funding was sealed when the congressional appropriations committees largely followed the funding recommendations for medical and cancer research laid out in the president's fiscal year 2004 budget. For NCI each chamber recommended the same amount as the president.

These recommendations were approved despite the fact that NCI only funds 28% of its approved grants. In other words, 72% of the approved, peer-reviewed grants NCI reviews never get funded. This perverse situation will only get worse under the fiscal year 2004 funding recommendations.

The news gets worse. In the recently passed Medicare reform bills funding for cancer treatment took a big hit. According to an analysis by the American Society for Hematology, "...it is projected that the House and Senate proposals would reduce payment for cancer drugs by about $700 million per year, but would add back only about $190 million in improved reimbursement for the administration codes. Thus, a net reduction in excess of $500 million per year is under consideration for chemotherapy services."

So, while the science and treatment for cancer has never looked better, our policy makers have responded by limiting the funding stream to realize the opportunity. To exacerbate the problem, they have recommended a reduction in the vital reimbursements needed to ensure minimal access to quality cancer care for Medicare recipients. If enacted, these proposals will have disastrous consequences for all cancer patients, oncologists, and researchers.

All this is happening at the time of greatest scientific opportunity to make cancer a manageable, treatable, chronic condition that would eliminate suffering and death due to the disease. Where is George Orwell when you need him?

The Ugly Truth

Cancer is the number one killer of Americans between the ages of 25 and 64, i.e., the most productive years of our lives. Every day 1,500 Americans die of cancer and more than 3,000 are diagnosed.

Despite these facts, Congress and the president have decided to treat cancer as a deflated political football. What we are witnessing are the consequences of the perception that medical research was the big winner over the past five years and now it is some other constituency's turn. Why do we have to have a funding world of winners and losers?

I would argue that there are two primary reasons. First, winners and losers in the appropriations process is a direct consequence of the tax cuts signed into law over the past two years. When you take $1 billion out of the government's resources, you have to begin to expect serious priority adjustments as Congress decides how to allocate money.

As I wrote in the August 2002 issue of Myeloma Today:

What was needed...was an understanding and appreciation of how the political and appropriations processes were dependent on each other. How, for example, could the appropriations committees begin to fulfill the wishes of the competing funding constituencies if tax cuts diminished federal resources by $600 billion?

Under these conditions, no constituency should expect to fulfill their wish lists, or, in a more likely scenario, the future of appropriations would translate into a process of perceived winners one year becoming losers in the next...

That might translate into education programs not being funded at the levels promised in previous years. It also may translate in reductions or stagnant funding levels for other health programs...

And in boom-and-bust funding cycle scenarios, it may mean that next year's medical research funding figure will barely rise while other programs, the perceived losers of the current cycle, will experience greater increases. It will be the legislative metaphor of moving around the deck chairs on the Titanic...But instead of "guns or butter" the mantra for advocates may be "tax cuts or cancer research" or "tax cuts or education funding."

On the other side of the discussion, there would be no guarantee that research funding would automatically go up if tax cuts were defeated and the federal funding stream remained uninterrupted. Those decisions would again be left up to the various appropriations subcommittees and there are no guarantees that link tax income with funding for programs...

But we should expect winners and losers in the appropriations process. Although the NIH part of the equation looks promising for cancer research advocates this year, the other parts do not look as promising. The outlook for next few years is even more nebulous, especially for NIH.

And remember to connect the dots. At least then it is easier to explain the final results. And remember that it is more likely to be on the losing side of the appropriations process when the income of the federal government is constricted by tax cuts.

Another reason is the fragmented and quiet nature of the cancer constituency. We still tend to focus too much on "our cancer" rather than champion the big picture of NIH and NCI research. And we expect that the sheer logic of the cancer arguments will prevail.

The reality, however, is different. In one discussion I had with a senior congressional staffer this year, she candidly admitted that she had heard much more from education advocates than from cancer advocates. And when she did hear from cancer advocates, it was usually in support of issues and funding related to "their" cancer. Since Congress does not appropriate by specific disease category, this segmenting of cancer types further undermined the overall message. It should be no surprise, then, that education funding will be a big winner in this year's appropriations cycle.

In order to reverse this trend, all cancer advocates must become more sophisticated and consistently vocal. Beginning now, we should all make our concerns about cancer research funding and potential Medicare cutbacks known.

We have to begin the process for next year's appropriations cycle now. We have to become engaged in the budget debate that follows the president's State-of-the-Union address to ensure that Congress allocates enough money for the appropriations subcommittees to have the freedom to make decisions to lessen the need for winners and losers.

We have to work the appropriations process with messages like those of the One Voice Against Cancer coalition to increase funding for NIH, NCI, and the Centers for Disease Control and Prevention cancer programs. And we must do so in concerted voices with all the members of the cancer advocacy community.

I urge you to watch for the action alerts in the Myeloma Minute and to contact me if you have questions or advice. I urge you to engage your friends and family members around the country.

We must make Congress and the administration to understand that 1.3 million Americans will be diagnosed with some form of cancer this year. We must make them understand that more than 570,000 Americans will die of some form of cancer this year.

These are not numbers that can be relegated to a political game of winners and losers. The stakes are too high and the science is too promising.

In discussing the context of the 2015 initiative, NCI Director von Eschenbach has brilliantly put the nature of the challenge facing us into historical context. At the turn of the 20th century, the fundamental question of science was the nature of matter. At the turn of the 21st century, the fundamental question of science is the nature of life.

Looking back, it took science 50 years to move our understanding of matter from the horse-less carriage to the advent of supersonic flight. Moving forward, the development of molecularly targeted drugs that will eliminate suffering and death due to cancer is in, if you will, the horse-less carriage phase. We cannot wait 50 years to realize its promise. There are too many lives at stake, especially with the aging of the baby boomer generation.

We can only realize the 2015 initiative if our policy makers understand its implications. It is up to you and all of us to make sure they get the message. s